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    • VACCINE RECOMMENDATION:  DINET encourages all its members to receive the vaccinations and boosters for COVID-19, unless specifically advised against it by your medical provider.  To better understand the virus, the vaccine and the effects on people living with dysautonomia, please watch Dr. Svetlana Blitshteyn's video "COVID-19 and Dysautonomia"

Self-Advocacy: Speaking Up and Speaking Out


ashrapnell

As an individual with Autonomic Dysfunction, I know all too well that it is very important that I communicate effectively with my medical team.  However, I also know that I am one of those people who have difficulty asking for what I want or need from my doctor. Even though I am a healthcare professional, I find that when faced with the need to ask for something for myself, I avoid it like the plague. Even when I really could use some help, I still worry about being a bother to them.  I still feel that I am taking up the time they could be spending with another patient.  

I can’t help but think there are other people in this same situation of worrying more about the doctor’s time than their own needs. But it is critical that you find a way to comfortably talk to your healthcare professionals.  It’s possible to be polite and respectful and to still be assertive at the same time.  Of course, this is common sense, but it’s harder to do than it sounds when you are faced with a daunting appointment.

Without doubt, communication is crucial to good outcomes in healthcare. When people take an active role in their care, research shows they fare better -- in satisfaction and in how well treatments work. A passive patient is less likely to get well.  So, it is very important to be able to ask questions, voice concerns or be able to express it when you need extra support.

I am an active member of the Ehlers Danlos community in the UK, and I have witnessed friends and fellow community members struggle with similar issues because they are nervous about vocalising their concerns. I know many people who have left their doctor’s office in tears because they felt they weren’t being listened to or the appointment ended before they had gained the confidence to ask questions.

If you are worried about any aspect of your health (an ache or pain or symptoms) and your doctor dismisses it, find someone who will listen and help you with the concerns you have. It might be nothing (I know that my autonomic dysfunction is good at playing up for no good reason), but it might be something, so it’s best to be sure.

If your doctor recommends a treatment and you are unsure if you want to try it or not, ask for a second opinion, or even a third. Because although they may all agree with each other (or not) consensus between them may bring peace of mind.

Good doctors and healthcare professionals don’t feel threatened or offended when their patient asks for a second opinion, ordinarily they welcome the input. Good doctors want to be able to answer their patient’s questions to help them better understand what is or is about to happen to them. Within reason, a doctor should be willing to spend as much time as is necessary with their patient to ensure they are fully comfortable and understand their diagnosis and any potential treatments that might be available for them.

It is important that you feel you can trust your doctor. Without trust the relationship just isn’t going to work. You should be able to leave your appointment feeling satisfied that you were able to voice your concerns. And if your questions weren’t answered, be sure that either the doctor will look into them or that they provided you with the information you need to find the answers. Remember, the doctor won’t be able to answer everything – but the key is that they are willing to admit that and try to give you the guidance you need. Listen to your instincts. If someone or something makes you feel uncomfortable, seek help elsewhere. And speak up if you feel you have been inappropriately treated. If not for yourself, do it to save another patient from having a similarly bad experience.

Regardless of the rarity or severity of your condition, you must be your own advocate. Unless you are lucky and have a spouse, friend or family member who can attend every appointment with you, and be your voice, you must find your own.

If you continue to have the same symptoms or problem even after following what you and your doctor (mutually) agreed was a good treatment plan, ask about other options for treatment. Medicine is constantly evolving and the available options may have changed.

While it’s good to stay current on developments about your symptoms / condition, be careful about where you research information. For example, message boards or badly put together “informational” sites and random Internet searches are not necessarily the most sensible places to look. Using the internet is fine, but please ensure that you check the sources of the articles that you’re using. Internet information should generally be taken with a pinch of salt.  The same is true for advice from well-meaning friends and colleagues.  Always follow-up on any information you read or hear about by finding a credible source to back it up.

Ask questions, be heard, listen to your instincts. When in doubt, check it out. You’re worth it.

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